By Tim Rohr
Every year, we mark April 1 as Autism Awareness Day with proclamation signing, photo-ops, community fairs, display booths, fun and games. For kids, these special kids...Children grow up, but "autism awareness" campaigns don’t mature beyond pomp and circumstance. “Awareness” ceremonies fail to highlight the challenging realities that await children as they transition to adulthood. - Mar-Vic Cagurangan
There are two important articles in the Pacific Island Times this month: "Lack of awareness month: The abandoned end of the spectrum" by the Publisher, Mar-Vic Caguangan, and "Navigating the DISID labyrinth" by me (Tim Rohr)
Functionally, both Mar-Vic and I make the point that the very system which is constituted to provide for and protect special needs children like ours, is systematically and neglectfully abusing these same children while said providers celebrate themselves with banners, proclamations, and ever more funding and paychecks for themselves.
Thanks for reading...and caring. Something CAN be done. But it's going to take the same effort as it took to expose the corruption and filth in this archdiocese.
Many parents on Guam with special needs children end up going and living off-island because they can't get their children's needs met here. As a teacher, I've heard of this happening again and again. Unfortunately, most such parents can't afford to relocate.
ReplyDeleteRelocation should be avoided. I heard of a student who was relocated; the family was separated and it cost the government over $100K/yr.
DeleteThere may be other ideas presented, but I'm wondering what would preclude this option? An alternate option COULD be: Public Health rents/secures a 2 bdrm apartment with funds from Section 8; hire and train an adult as a full-time care-giver specific to the individual's needs and be able to take him/her to doctor's appointments and to recreational areas. The individual will experience the sense of independence, however limited, as well as provide the individual the ability to participate in family functions. This arrangement is not only far more fiscally responsible for the government and keeps families together. Just my thought ...
My niece, who passed away recently, she & her son, who has been diagnosed with Autism, were both doctor certified with disabilities, not able to work. They were looking forward, before she passed away, to relocate to one of the states to get hopefully get better care/assistance. 🥲
ReplyDeleteMy niece had applied for the monthly disability pay. She informed me that it was about $186/month. I seem to recall that the funds were broken down and that $35 was designated for her GPA electrical bill. 😢
I remember sharing at least one comment concerning the disability pay, on one of the DISID facebook page posts, to hopefully raise some awareness. It’s been awhile since.
Someone later had mentioned going to the legislature concerning the issue.
I greatly appreciate your post, Tim. Thank you 😊
Thanks for sharing Grace. If your niece could not work, and if one of her parents was eligible for SS (65 yrs), your niece should have be eligible for SS as a dependent once she turned 18 yrs old. ., because your niece never worked, I don't know if her son could benefit from your niece/his mother or from his grand-parent. He should be eligible for benefits from his father who is SS eligible, supportive or not. It will be a lot more than $186.00
DeleteI learned quickly that Public Health Case workers are not equally knowledgeable. When my son turned 18, his Case Worker at Public Health stated that he could earn more case subsidies if I charged him rent because he, too, could not go out and work to assist me in paying for his expenses. So aside from the food stamps, he was allotted $300.00 for other expenses. Later, when his father became eligible for Social Security and Medicare, my son became eligible for both SS and Medicare benefits as a dependent (of course he lost the cash funds from PH). Hope my comments helps you advocate for him.
Thank you for your comment, Grace.
DeleteYes, something CAN be done! And families won't have to leave the island. We just have to change the system!!
ReplyDeleteHow? I've always felt that the funds should be available as Grants to entrepreneurs who are Individuals With Disabilities (IWD), OR to individuals who are interested in hiring at least 80% of their employees who are IWD. It has been done in the States within the private sector, and it can be done on Guam if start-up funds from federal grants would be available via DVR; laws may have to be amended, but it can be done.
If my recollection is correct, the spaces outside government building are available for entrepreneurs (IWD) to use to conduct business. Depending on the IWD, a couple could collaborate and manage their own business such as a Hot Dog stand. IWD can own and manage a business such as a car-wash located at UOG, or GCC area. Through grants all qualified applicants would be eligible to purchase supplies. Individuals who can not work in a fast-paced, stressful environment, can run their business from home; I know two adults who do just that! What other businesses may look like will depend on their skill set. They could then sell their products on e-bay or on consignment at a near-by store.
Ideally, I would like to see the former school for adults with disabilities that once operated down the street from KMart. Adults with disabilities would learn to do various skills of interest to them; they would be able to market and sell their products there or Wednesday nights at Chamorro Village or other village venues. Until such a project materializes, and if federal funds allow, DVR could negotiate to renovate a couple buildings and use them rent free; they could start training young adults right out of high school so that the private sector will be motivated to employ the graduates ... Or help and support them to be self-employed.
This is election year. It's a great time to should survey the candidates running for office; present them with our concerns and ask them if they would support amending the way VR functions. Because we are dealing with federal funds, our Congressional Representative should be involved in advocating for changes. Parents are the source of change: We MUST complain LOUDLY, CONSISTENTLY, and PERSONALLY and followed-up with letters/emails to the Director of DVR and CC to the Governor and federal representative! (For those of you who don't know me, my son has passed away but I feel strongly in support of improving the independence of our children with disabilities and am willing to participate advocating for them.)
Thank you, Mary.
DeleteThank you Mary.
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